Wednesday, May 17, 2017

Disappointment In Chronic Illness

Chronic illness is defined as being long lasting, over time, consistent. For those of us with Autoimmune illnesses that are chronic, that definition includes incurable and unpredictable. This means that we are always sick, but the symptoms come and go. One day our disease may be manageable, or asleep, and the next it may be out full force. We never know from one day to the next how we are going to feel and this makes it very hard to make plans in advance much less to keep them consistently. For the chronically ill, this is our biggest disappointment.

By way of example, I can tell you my story. You see, I have been chronically ill for 21 years. (Don’t worry-this isn’t a 21 year history!) The treatments for my illness caused weakness in my bones and I sustained 2 fractured vertebrae in 2014 and 2015. In november of 2016, my disease came out of remission and has only recently become manageable again. So basically, I have been struggling since August of 2014 to be pain free and as active as possible. That’s enough of a history I think though a few more details will be coming.

So, because of all this, and the fact that I don’t want to become a sedentary person until my disease makes it a necessity, I decided to find some challenges in my life. I started small. I invested in the ability to research my family history. Challenging my brain is huge on days when I can’t be up and around. And I really don’t want to find out if there is truth to the saying “use it or lose it”. I also found a volunteer position that I am physically able to do: I help at a an animal rescue center. I work with cats and kittens as I’m not strong enough to deal with the dogs. At adoption events, my job is literally to cuddle frightened kittens! Seriously! I know right?! That takes care of mental exercise and feeling needed. On to point of this story.

The color run. Or for me, the color walk. It’s a 5k (3.2mi) event with lots of brightly colored powder and unicorns. Apparently. I’m not sure where the unicorns come into play, but I’ve heard them mentioned. Anyway, a friend of mine sent me an invite to sign up on her team. And I did. Spur of the moment. I’m not even sure why as I don’t think I’ve walked more than a mile since my injuries. But sometimes, I think we all get sick of being sick. Yes, it’s part of who we are now and we all know the idea of not letting it define us, but the reality is it’s always there. And I don’t want it to be. So I signed up to WALK. Something I should literally be able to do.

The problem, I can never be sure I will actually be able to do anything. Even walk. And the weather where I live decided not to cooperate enough for me to get outside to practice. I walked indoors whenever I could but I didn’t know how far I was going. And to be honest, I didn’t feel the support I wanted to from my family. I get that they were concerned for my health, but I really wanted to do this. As afraid as I was of not being able to complete the entire walk, I really wanted to try. I prepared for the back pain, the migraines, the dehydration, the sun exposure, the swelling, the joint pain, the breathing issues-all effects of my autoimmune disease. The one thing I didn’t prepare for was the thing I should have seen coming. I came out.

Yup. I got sick. I am writing this with a fever, stuffed up unable to breathe, swollen, joints hurting, and weaker than weak. Two days to go before the walk and counting on an immune system that would rather fight my cheeks than an evil virus. And it's not just the virus. My disease is out too as is common when we get sick. And I’m disappointed. It seems I’m always disappointed. I want to participate but I can’t count the number of times this has happened.

Of course I go on. We all go on. We have to. But to say we don’t get disappointed is an understatement. Sometimes we get downright depressed. Sometimes all we want is to be able to live like we used to, making plans and keeping them. Doing all the things we want to do because we want to, when we want to, where we want to, and in whatever weather is out there without a bag of medicine.

About Me

Born and raised in Rochester NY, I was diagnosed with Sjogren’s 4 months after my second son was born. My kids are now 21 and 23 years old. I have since developed MCTD, Inflammitory Arthritis, and Fibromyalgia. I have raised my kids, worked at my career for over 30 years, and have been a wife to her husband of 26 years while being diagnosed with an autoimmune disease for 21 of them. I currently writes from the heart about these experiences while wrangling our one rescue dog and three rescue cats.